Category Archives: The2016Story

This will be the last post in the series The2016Story. Not because that Story has ended but because it is continuing. I will continue to update and write but 2016 is over and you are now caught up on it. I feel like I barely scratched the surface of everything that actually went on, but I did my best. Some things are just too difficult to write about.

It was the hardest year of my life but I actually think I am having more trouble now than all through the summer and fall of last year. I am struggling to move on. How do I adjust my life to this change? How can things ever go back to the way they were before? It reminds me of a part of one of my favorite movies (Lord of the Rings):

“How do you pick up the threads of an old life? How do you go on? In your heart, you begin to understand, there is no going back. There are some things that time cannot mend. Some hurts that go too deep, that have taken hold.”

Now, I believe that our God is able to heal those hurts but I don’t think my life will ever be the same again. In some aspects, that is a good thing. I don’t want to forget what God has taught me or how I’ve grown to rely on him and on others. But to be completely honest, some nights I lay and cry because I want my old life back. I want to go through a day without headaches, seizures, or pain. I want to be able to wake up in the morning and actually feel refreshed, ready to take on the day and serve Christ. I want to be able to do the things I could before and I wish that none of this had ever happened. Which reminds me of another Lord of the Rings quote:

“Frodo: I wish the Ring had never come to me. I wish none of this had happened.
Gandalf: So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.”

It has been a constant prayer of mine that God would be glorified in my life no matter what happens. No matter what I’m going through, I want to love others, share the gospel, and see his Name lifted high. And that is my prayer for 2017.

(You are currently reading a post in a series called The2016Story. If you have jumped in in the middle and would like to start at the beginning, click HERE.)

I don’t make New Year’s Resolutions. I haven’t for a long time now, but I do usually pick something in my life that I need to work on and pray for the Lord to help me in that area.

On January 1st of 2016, I asked God to make me a more compassionate person. I realized that I rated very low on the compassion scale and I wanted to be more tenderhearted and sensitive. You see, I’m usually a get-over-it, you’ll-be-fine kind of person. So I prayed and asked God to teach me how to give more compassion to others in 2016.

Did you know that God doesn’t think the way that we do? You probably did. Actually there is a verse that goes with that, “For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth so are my ways higher than your ways and my thoughts than your thoughts.” Well, in MY mind, God was going to make me more compassionate by sending someone to me that really needed compassion and mercy and I would suddenly acquire tons of compassion and have this wonderful opportunity to show it to them. I had it all figured out. But as the verse says God’s ways are not my ways.

Instead, he made it so that I was the person who needed compassion. I needed the people around me to be sensitive and tenderhearted and compassionate. I needed people to care for me, encourage me, and show me gentleness and comfort.

And that’s when it hit me. I didn’t know what compassion was before. If God had done things my way, I wouldn’t have known what to do because I didn’t know how to comfort someone or show them compassion. I needed all those people to teach me and show me first before I could learn to show it to others. I desperately wish I could have learned another way but I know that God’s will is perfect and he is always good.

I am thankful that God placed those people in my life to be living examples of compassion. So you see, God really does answer prayer. I have learned so much about how to comfort others who are going through a difficult situation. I definitely still have a lot to learn and I still pray for compassion often but I am thankful that God didn’t do things my way. I am thankful that his thoughts are not mine and his ways are higher than mine.

(You are currently reading a post in a series called The2016Story. If you have jumped in in the middle and would like to start at the beginning, click HERE.)

So the appointment in Cleveland was at the end of October and it is now February. What has happened since then, you ask? I’ll tell you.

It has simply been a game of trial and error with meds. Trying to find the right medication or combination of them that will control the seizures with the least amount of side effects.

Actually, wanna hear a funny story? Oh good. So a little while back I was on these two medications and they were actually doing a fairly good job at controlling the seizures. I was beginning to be hopeful that we may have found the right ones. And although the side effects weren’t great, I had decided I could live with them. There was just one teensy-tiny issue. After I started the combination, once in a while I would have rapid heart rate problems. Like so rapid that I could see my heart beating at the front of my neck and then my breathing would increase and sometimes I would pass out from it. Being an expert in passing out, it didn’t bother me too much and since this would only happen once a week or so and I didn’t want to be taken off of these meds that finally seemed to be working, I didn’t call my doctor about it. Well, some friends convinced me in the end that rapid heart rate isn’t actually something you should brush off and so I called the doctor’s office and left a message. Are you aware that neurologists FREAK OUT anytime something with your heart goes wrong? They are calm as cucumbers until you mention something odd with your heart and then it’s you are probably dying and should go to the ER IMMEDIATELY! I’m not sure I’ve ever talked to a nurse on the phone where I felt like I needed to tell her to calm down. Needless to say, I was taken off one of the medications the next day and the heart issue went away. But the seizures came back. (Sorry; that wasn’t really a funny story, was it?)

In case you haven’t gotten the idea yet, my body hates medicine. Every time I switch to a new one or my dose changes, it feels like I’ve been tied up behind a horse cart and my body is being drug through the dirt behind it. One of the main side effects of all seizure meds is sleepiness/tiredness but some also prevent you from being able to sleep at night. How cruel is that? Have you ever been so tired that a gravel path looks inviting to lay down and take a nap on? I have. I have gotten to the point where I could lay my hurting head down anywhere and fall asleep. I fell asleep sitting up talking to my housemate just the other day. It’s bad.

And this game isn’t over yet. I actually just changed my medicine dose last week and I go back to Cleveland Clinic at the end of this month so we’ll see what happens then.

In my next post, I want to share with you something really awesome that God did with all of this mess and how he answered a prayer of mine.

(You are currently reading a post in a series called The2016Story. If you have jumped in in the middle and would like to start at the beginning, click HERE.)

Sometimes I wish my doctors knew how much they were prayed for. How often we begged God to give them wisdom and knowledge on what to do. Maybe I should have started each appointment like that. “Hey, I just wanted to let you know that we prayed for you a whole lot before we came here today.” I wonder how that would have affected the appointments?

Boy, did we pray before I went to Cleveland. Knowing that if they didn’t have any solutions, then I was pretty much stuck, caused everyone around me to pray for that appointment.

From the very beginning, Cleveland Clinic was awesome to work with. Their staff were friendly, actually returned phone calls, and made the entire process very smooth. Once there, the epileptologist spent over an hour talking with us (Natalie went too.) Every other time I had seen a specialist, they were usually in the room for ten minutes or less but this doctor took a lot of time to get to know the situation and to explain things to me.

She told me that what I have is Juvenile Myoclonic Epilepsy. FINALLY. An actual diagnosis. She pulled out her pad of paper and listed the different medications they use to control this condition and showed me what options I had left. She explained things really well and also told me some warnings that no other doctor had yet to tell me.

I asked her why it just suddenly appeared and she explained that if your brain is already pre-disposed to having seizures and you put a lot of stress on it, then this condition can come to the surface. My face lit up, “So if I take away that stress…” And that’s when the crushing blow came. She started to shake her head, “No, your brain will not go back.”

I didn’t look over at Natalie and I knew she would be avoiding eye contact with me as well. My only thought was, So I’ve ruined my brain forever. It’s never going to go back to the way it was. And guilt started creeping in. Everyone had told me I was pushing myself too hard and I refused to listen. I knew it was my fault and I knew there would be those people all too ready to say, “I told you so.” (And there were.) And yet how was I supposed to know my brain was “pre-disposed” to having seizures?

I thought I was fine until I got home that night and ended up just laying in bed sobbing. In one sense, it was wonderful to actually have someone who knew what was going on. But I guess I had always had this hope that there would be some magic wand to wave and everything would be fixed and to find out that there was nothing they could do but use medications (with terrible side effects that my body hates) to control it was beyond disappointing. I had this sense of, “Okay, if this is how my life is going to be then I need to figure out how to live like this.”

But that is so much easier said than done.

(You are currently reading a post in a series called The2016Story. If you have jumped in in the middle and would like to start at the beginning, click HERE.)

So where do I go from here, right? I had just spent three days in the hospital without any real results. I had a follow-up appointment scheduled with the neurologist and I told him that the medicine wasn’t working. I was still having seizures. I asked what my options were and sat there in silence as he basically blamed me for the medications not working. He made it sound either like it was my fault or like he didn’t believe me that they didn’t work. Aaaaaannnnnd that was the last time I saw him.

I’m sure it is hard to be a doctor. So much of it is trial and error and it would kill me to watch people suffer who were under my care. I think that must be why so many doctors and nurses have developed the hard, uncaring outer shell. I certainly met some very kind people in the medical world, but they were definitely the exception, not the rule. In fact, they were so few and far between that I could easily tell you each one.

So there I was: answer-less and now doctor-less. Fortunately, I wasn’t Jesus-less! A few days after that appointment, I wrote in my journal:

“Today is the 6 month mark from the first seizure (it was Oct. 10th). Who would have thought it would last this long? Who would have known what God was about to bring me through, to teach me? Which reminds me of a verse I read today in Psalm 50, ‘The one who offers thanksgiving as his sacrifice glorifies me…’ I so want to be that thankful person! I don’t want to take things for granted. Thank you, Lord, even for the rough times.”

What do you need to be thankful for today? What have you been taking for granted that you can simply pause and thank the Lord for? What is something you have never even thought about thanking God for?

A few days after that appointment, Natalie walked into the office and announced to me that she had gotten an appointment for me at the Cleveland Clinic. And it was less than three weeks away (which is really fast in the medical world for an appointment.) I was so thankful! Thankful for Natalie who worked tirelessly to get that appointment, for the Lord working everything out to get it so quickly, and for the opportunity to visit some of the best doctors in the nation.

(You are currently reading a post in a series called The2016Story. If you have jumped in in the middle and would like to start at the beginning, click HERE.)

During my second day of testing, one the nurses asked me if Doctor so-and-so (the Epileptologist) had been in to see me yet. I told her that I wasn’t sure because so many people had been in and out. She replied, “Oh, you’ll know her. She’ll have an entourage of medical students following her around.” The nurse was right. The next morning a doctor walked in and I knew exactly who she must be because there were 6 students right at her heels.

She told me that I could go home that day. She explained what they had seen. Apparently, my brain has these abnormal high waves all the time and they aren’t sure why. They have the potential to turn into seizures but they aren’t actual seizures. They only saw a few actual seizures while I was there even though I felt like I was going crazy the whole time. Her solution: put me back on the meds until we find the right one.

I felt a little stunned. I had gone through all of this only to be right back at the same place. Still no answers really. Just more medication to control symptoms, not fix the cause.

But God was teaching me something in that hospital bed. The first night, when the nurse woke me up to check my blood pressure, I got up to use the restroom. Which is really difficult, by the way, when you have 26 wires coming off of your head and 5 off your chest. As I went to wash my hands, I fell. With no warning, a seizure came and BAM! I was suddenly sitting hard on the floor. I was so surprised that it took me a minute to get back up. You see, every seizure I had had before that one, came with a warning sign. That was the very first one that came with no warning whatsoever.

Because I always had warning, all the nurses had let me use the restroom by myself even though technically they weren’t supposed to, but now that was over. A nurse had to be with me every time. Talk about humbling.

The worst part was, as I crawled back into bed exhausted that night, I realized I had lost my last bit of control. Having that warning gave me the assurance that I could always be sitting or leave the room but that was gone now. Suddenly the world felt a little more unsafe than it had a few hours before.

As I laid in my own bed on my first night at home, my heart was in a lot of turmoil and I couldn’t fall asleep. I was talking to God about how I had wanted that control and warning and how I was afraid now that it was gone. I realized I was going to have to up my trust game. I was going to have to pray for God to give me trust in him more than ever before. Have you ever had God answer a prayer immediately? In that moment, as I prayed for God to calm my heart and give me trust in him, I felt a wave of peace come over me such as I have never felt before. I thanked him and fell asleep right away.

So no, I still had no answers. No magical potion to make everything go back to the way it was. But I do have a God with answers and as hard as it is sometimes to actually do, I knew I could trust him and rest in him.

(You are currently reading a post in a series called The2016Story. If you have jumped in in the middle and would like to start at the beginning, click HERE.)

Have you ever been really thirsty and gone to take a drink out of a water bottle only to discover that it’s really flavored water and not regular water? And it wasn’t at all what you expected?

That’s how I felt with this monitoring. I had it so set in my mind that all I was going to do was lay there and sleep and relax, maybe watch some movies, or read a book and it turned out to be something completely different.

Sleep deprivation is terrible. Let me just say that. After the second round of 21 hours awake and four hours of sleep, I was talking nonsense and I knew it. I have never been so tired. The one night they woke me up in the middle of my four hours of sleep to do a routine blood pressure check! Also, they try to induce seizures while you are under the monitor. So they bring in the strobe lights, played all sorts of different sounds, and they try to stress your heart and your brain in order to cause seizures.

Now, would you like to know the good parts?

-Friends can visit! This hospital does the monitoring in the ICU so technically you are only allowed to have 2 visitors at a time but I know at one point we had 6 people in the room. So many wonderful people came to visit me over the few days! My mom spent the days with me and Natalie spent the nights since she was working and that was the only time she could visit. Natalie had the worse end of the deal- she ended up being the one keeping me awake until 2am.

-Thank Jesus for the Olympics!!! You know, I NEVER get to watch the Olympics because I don’t have cable but because I was sitting in the hospital, I got to watch more than I ever have before!

-You get to wear pajama pants the whole time! I didn’t have to wear a hospital gown as long as I followed their standards for what you needed to wear (which, fortunately, I had read ahead of time) so I got to wear my own clothes.

-You can play with the monitor. Ok, probably shouldn’t have been doing this, but it didn’t take me long to find out that if I clenched my teeth together the EEG monitor would go crazy. I never got in trouble for it….

-I had one really awesome nurse! Actually, she was the night tech and she was amazing. That girl needs a raise. The first night she came in and found how tight my head was wrapped (it was cutting off the circulation to my ears) and she re-wrapped the whole thing. She explained things to me which no one else had taken the time to do and I am so thankful for her!

(You are currently reading a post in a series called The2016Story. If you have jumped in in the middle and would like to start at the beginning, click HERE.)

Hi, my name is Kimmy and welcome to my blog! I am just a regular person saved by grace through faith in the sacrifice of Jesus Christ. A few of my interests are running, theology, horseback riding, baking, the flute, reading, and laughing with friends.

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Romans 12:1-2
I appeal to you therefore, brothers, by the mercies of God, to present your bodies as a living sacrifice, holy and acceptable to God, which is your spiritual worship. Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.